Digging Deeper: Understanding Trajectories and Experiences of Shared Decision-Making for Primary Prevention ICD Implantation

• Type of Material: Article
• Authors: Birju R. Rao, Emory University; Faisal M Merchant, Emory University; Eli R. Abernathy, Emory University; Christine Bethencourt, Emory University; Dan Matlock, University of Colorado School of Medicine; Neal Dickert, Emory University
• Language: English
• Date: 2022-09
• Publisher: Elsevier
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2022 Elsevier Inc. All rights reserved.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): https://doi.org/10.1016%2Fj.cardfail.2022.04.014
• Title of Journal or Parent Work: Journal of Cardiac Failure
• Volume: 28
• Issue: 9
• Start Page: 1437
• End Page: 1444
• Grant/Funding Information: Supported by the Ten Broeke Family Fund.
• Keywords: shared decision-making; implantable cardioverter-defibrillator; health policy
• Research Categories: Health Sciences, Health Care Management; Health Sciences, Public Health

Abstract

Background: Shared decision-making using a decision aid is required for patients undergoing implantation of primary prevention implantable cardioverter-defibrillators (ICD). It is unknown how much this process has impacted patients’ experiences or choices. Effective shared decision-making requires an understanding of how patients make ICD decisions. A qualitative key informant study was chosen to capture the breadth of patients’ experiences making ICD decisions in the context of required shared decision-making. Methods and Results: We conducted in-depth interviews with 20 patients referred to electrophysiology clinics for the consideration of primary prevention ICD implantation. Purposeful sampling from a prior survey study evaluating mandated shared decision-making was based on patient characteristics and responses to the initial survey questions. Qualitative descriptive analysis of the interviews was performed using a multilevel coding strategy. Patients’ paths to an ICD decision often involved multiple visits with multiple clinicians. However, the decision aid was almost exclusively provided to the patient during electrophysiology clinic visits. Some patients used the numeric data in the decision aid to make an ICD decision based on the risk–benefit profile; others made decisions based on other data or based on trust in clinicians’ recommendations. Patients highlighted information related to living with the device as particularly important in helping them to make their ICD decisions. Some patients struggled with the emotional aspects of making an ICD decision. Conclusions: Patients’ ICD decision-making paths poses a challenge to episodic shared decision-making and may make tools such as decision aids perfunctory if used solely during the electrophysiology visit. Understanding patients’ ICD decision-making paths, especially in the context of encounters with primary cardiologists, can inform the implementation strategies of shared decision-making help to enhance its impact. Components of decision aids focusing on the experience of living with an ICD rather than probabilistic data may also be more impactful, although the nature of their impact will differ.